In 1924 when thirty-two-year-old Edmond Landry kissed his family good-bye and left for the leprosarium in Carville, Louisiana, leprosy, now referred to as Hansen’s Disease, stigmatized and disfigured but did not kill. Those with leprosy were incarcerated in the federal hospital and isolated from family and community. Phones were unavailable, transportation was precarious, and fear was rampant.

Edmond entered the hospital (as did his four other siblings), but he did not surrender to his fate. He fought with his pen and his limited energy to stay connected to his family and to improve living conditions for himself and other patients.

Author Claire Manes, Edmond’s granddaughter, lived much of her life gripped by the silence surrounding her grandfather. When his letters were discovered, she became inspired to tell his story through her scholarship and his writing. Out of the Shadow of Leprosy presents her grandfather’s letters and her own studies of narrative and Carville during much of the twentieth century.

Below is a conversation
with Claire Manes where she discusses the secrecy surrounding her grandfather, her research into her family's past and the current understanding of leprosy.

How long did it take you to write
the book?

I never knew
my grandfather who died thirteen years before I was born. I had absorbed my
family’s ethos that we did not talk about him, but I always wanted to know
him.From that perspective, I have been
working on this story for almost sixty years hoping to discover him despite my
family’s silence.

Then thirteen
years ago I read letters that my grandfather had written to his family from
business college, the Army during WWI, and Carville, Louisiana. His letters
inspired me not only to read but also to study the collection. That study of
Carville’s history and my family story impelled me to write this book during
the last two years.

Why do you think there was so much
secrecy about your grandfather?

We always
understood that my grandmother was deathly afraid of Hansen’s disease and that
she never spoke about her husband. There is certainly cause for that. In 1924
when my grandfather first entered Carville, the condition was feared and
stigmatizing. My grandmother must also have known that speaking about her
husband would have affected the way she and her children were viewed and
treated in the community. Later, perhaps the habit of secrecy had become
ingrained in her. As the years went by it became obvious that my grandfather’s
illness was a public secret; people knew about it but also knew not to talk
about it.

Edmond and Claire married in 1917

When I began
to research the letters I learned that there was tension between my grandmother
and grandfather during his years at Carville. Perhaps this too added to my
grandmother’s silence; whatever her reasons were, we all knew not to ask
questions.Even in her eighties, my
mother acknowledged that she would not have spoken about her father if her
mother were still alive.

Happily,
writing about my family has lifted the shadow of leprosy that enveloped all of us
for so many years.

What were you hoping to discover
when you began searching for your grandfather?

As a young
child, my fantasy was that a picture of my grandfather or a note from him would
mysteriously fall out of a book or appear in a dresser drawer. I smile now at
my innocence, for my grandfather had never lived in the house I so carefully scavenged.By the time I reached adulthood, my search
was as unimaginative as my childhood search had seemed magical.

I sat down to
read the letters with no expectations at all. Happily, I was captivated by the
words my grandfather had written in his own hand.I knew then that I wanted to do more than
simply read those letters.I was
discovering my grandfather in ways I had not imagined possible and I wanted to
honor the life of this man I had finally discovered.

Did anything surprise you when you
read the letters?

I was happily
surprised by the collection as a whole because it gave me an insight into my
grandfather at three important stages of his life.I met him as a young man away from home for
the first time as a student, as a married man in the Army, and as a man
incarcerated voluntarily at Carville as a patient. In the early letters I
discovered a young man of ambition and compassion who had hopes for a full
life.In Carville this same compassion
and ambition were stymied, but also

In this 1917 picture Terville and Lucy Landy sit
surrounded by their five children. Unknown to the
family, all five children had probably already
contracted the leprosy bacillus

redirected as he set about finding meaning
in a life he had not chosen.

I also discovered that I can no longer
idealize my grandfather. He was a man with his own demons and fierce demands on
himself and others, but he channeled those demands in a way that gave him
agency for his own life and enabled him to advocate for his fellow Carville
residents.

Perhaps,
though, the biggest surprise was the freedom I felt with the completion of this
book.I had intended to speak about my
grandfather and bring him “out of the shadow,” but I too have come out of the
shadow of my family’s silence.

Your book is about your
grandfather’s life in a different day and time when fear about leprosy and a
misunderstanding of its cause and contagion were rampant.What is the current understanding of leprosy?

Medically we
now know that Hansen’s disease or leprosy is only minimally contagious.Ninety five percent of the population has a
natural immunity to the disease, and even the five percent susceptible to HD
seem to be at risk only if there has been a prolonged contact with the
bacillus.When my grandfather was
diagnosed there was no understanding of leprosy’s transmission and there was no
known treatment or cure, but now with a multi-drug therapy a diagnosed HD patient
can be cured and is not contagious after just a few treatments.

Even so, in
today’s culture there are still misconceptions and fears about HD.People associate it with the leprosy
described in the Book of Leviticus, but these are not the same. Many may also recall
portrayals of the disease in literature and movies where victims are pictured
as badly scarred and/or ostracized by the community. People are not aware that
the disease is only slightly contagious to begin with and is curable. I would
hope that this book and other activist literature and organizations can dispel
misunderstandings that still exist.IDEA
for instance is an international organization that exists to achieve dignity
for people with HD and provide education for the rest of society.

Comments

Coleen Perilloux Landry said…

I am very excited to read this book. I have a small photo/journal of Carville in my personal web site at http://www.pbase.com/septembermorn. When I visited Carville it was a very emotional trip. My parents were born in the late 1899's (1892 and 1894) and leprosy was a very feared disease. My mother would not eat in a Chinese restaurant because she feared the Chinese had leprosy. So many fears, heartache and wasted lives. Thank goodness medical research has changed that.

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